Hello & Happy New Year 2010 to you all! I know it's been a while since my last update and lots of you are wondering about our little Warrior Princess. I'll try to bring you all up to date...
The week here with Don & Day for Christmas was wonderful... it's not without its challenges for sure having all of us in the same room - and Day ends up pretty sleep-deprived by the end of her visit. She enjoyed all the activity at the RMH, and loved being around her sister (who is just about the same size and surely within a pound of the same weight as her!). And Danika loved hearing the voices of her father and sister while they were here. Of course seeing Day wake up on Christmas morning and seeing all the gifts under the tree knowing Santa was there while she slept - well, that was precious! Unexpectedly, she wasn't all that interested in tearing into the presents as we thought she would be. It literally took several days and lots of encouragement from Don & I to have her open her gifts and 'help' Danika open hers as well. I think she was a bit overwhelmed. Can anyone out there relate??
We did make it to the Christmas Dinner at Becco which was really lovely. They had lots of activities for the kiddos and the food was out of this world delicious! Santa was there (or as Day calls him, 'Ho Ho Ho') and passed out gifts to all the kids and lots of photos were taken. Lidia's mother was there as Mrs. Claus and reminded me so much of my Noney, it was a bit scary - in a good way! Lidia and the Bastianich crew really pulled out all the stops to make Christmas special for so many families affected by cancer. It was pretty incredible. A bummer that Danika was just borderline neutropenic/not neutropenic, so we needed to keep her in her stroller and away from the crowds as much as possible. No pics with Santa for her!
Day also enjoyed her first snow experience as they arrived a few days after the big storm that left over a foot of snow on the ground here in NYC. We played around on the terrace here at the Ronald, so she had a safe and mostly CLEAN way to enjoy NYC snow. (Those of you who know me well are probably laughing thinking of what a germaphobe I am and how it's just like me to keep Day away from the 'dirty' and worse, 'yellow' snow!) =)
Another really great Christmas blessing was that all the cousins - there are eight in all - were here at the RMH on Sunday the 27th. My brother and his wife drove up from VA with their four children, and my sister and her husband and their two children who are very close to Danika at this point were, of course, here as well. This hasn't happened since before Danika and her cousin, Olivia (my brother's youngest, who is exactly one month older than Danika), joined the family in 2008. In fact, Day was just 7 months old the last time we were all together. My mom got to visit with all eight of her grandchildren in one place. Everyone snapped lots of pictures while the kids all grouped together and Danika sat next to them in the corner of a sofa. Day also got to see my Aunt Linda and Uncle Tony and cousin Stephanie who took the trip in from LI with my mom. It was a short-lived visit, sadly, as Danika had been a bit out of it with low-grade fever for several hours that day. (Not sure how any of those photos came out as she was pretty out of it.) After she reached 100.6, I needed to call Sloan. She was no longer neutropenic (as of the prior Thursday, Christmas Eve), but her temp was still too high and she wasn't quite herself, so they needed her to come into their Urgent Care Center to be sure all was ok and to draw cultures to be sure she didn't have an infection in her central line. She did need platelets and so she received her transfusion while in Urgent Care. Thankfully Don's Aunt (Aunty Lee) had come into town and so after we walked to Sloan and she and Danika were settled in their room in UCC, I raced back to the restaurant where my entire family was enjoying a delicious meal at Fratelli on 1st Avenue a few blocks from the hospital. (If you're local or plan to visit and haven't tried it, I highly recommend this restaurant - very yummy food and great, friendly service.) I got there at the tail end of dinner, but in enough time to enjoy the scene of the kids enjoying each other and to also enjoy some really great food. (I felt very special as my family broke into a round of applause upon my arrival!) Day was enjoying time with her cousins and on the walk back to the Ronald the girls broke into a chorus of 'Jingle Bells' (at least I think it was Jingle Bells - my memory is pretty bad these days!) - very cute. The kids enjoyed a great visit here before all the cousins had to say good-bye - a very special Christmas memory for sure. (By the way, for those of you who recall my 2am 'wake-up' banging on the door courtesy of Sloan and positive cultures for a line infection on the night of Thanksgiving after spending the day in UCC, you should know I kept the room phone ringer on LOUD and also slept with my cell phone ringer on loud and next to my head just in case I was to receive another late-night/early-morning phone call. Thankfully, that call never came and nothing ever grew back from the cultures they drew that day.)
After saying good-bye to Don & Day, as 2009 drew to a close, I planned to 'spread my wings' and spend several days on my own with Danika. I've thankfully had a friend or family member with me every step of this journey and, at this point it's more difficult and inconvenient than it is 'scary' or 'dangerous' to care for and be alone with Danika for long periods of time. I spent the evening of New Year's with my sister and her family and enjoyed a delicious home-cooked meal (thanks, Sissy!!) and, instead of ringing in the New Year on my own with a sleeping baby, I enjoyed some time with my lifelong best friend, Susan, who both surprised and blessed me by taking the train in to stay the night with us. (Thanks, Mike!!)
So, we began 2010 with 'mommy & me' time... what was nice is that at this point, Danika had completed the chemo cycle from earlier in the month, but the next one was not due to begin until that following Monday, so she was mostly feeling good and her counts were on the rise. We played a lot, got a bit of rest here and there which was nice, and I learned I can handle the vomiting and all else that comes with caring for this precious girl on my own. Although it's GREAT to have help, it's also nice to be able to care for my daughter on my own and know that I CAN actually do it. =) One step closer (if only in my my heart and mind at this point) to bringing her home and having my family all together again... I have to be able to do this on my own before I can even think about adding a three-year old into the mix, right??
So, Monday came and we began the 8th and last chemo cycle in this intermediate risk protocol Danika is on (COG-3961), which is actually her 10th round in total (she received one high-dose round at the beginning of our stay here in NYC and then one round of irinotecan before her surgery in October). It was one day of cyclophosphamide and doxirubicin IV infusions and so far she is doing well. Of course, there is vomiting, fussiness, sleeplessness, etc., but in general and as per her usual, you just can't keep a good girl down!! I should mention that just after New Year's, I came down with a sore throat and lots of congestion and sadly, Danika then got all congested, herself. Poor thing... while dealing with the yucky effects of chemo, she also had to deal with a runny nose and tons of mucous (gagging and spitting it up while trying to sleep) at the same time. They swabbed her little nose late Monday and, subsequently, we spent the remainder of our clinic visits this past week in isolation and/or in Urgent Care. (They are very careful to isolate kids who may be carrying any sort of virus so as not to spread to the other warriors there in the Day Hospital.) We also remained in our room at the RMH most of the time as well. All tests were negative for any viruses, thankfully! We are pretty well past that now and I can see the huge blessing in an illness happening last week while she is stronger, versus this coming week during the neutropenic phase, which is almost upon us.
In the meantime, we continue to work on getting her stronger and stronger. I was able to feed her tiny bits of pureed pears and apples these past few days (watered down a bit), today being the best experience so far - not much fussing and visible and audible swallowing at times - Praise God!! She loves to sit up [assisted, that is] and play with toys in front of her and will even reach into her shape sorter and take things out! This is great from an OT perspective from what I'm told. She seems to be able to catch herself and get her balance when she's about to lose it which is great and just the other day, when she was laying down and a small toy was caught under her arm she reached over her body with her opposite arm to grab it and pick it up - again, developmentally that is a big step forward! She is not to the crawling or pulling up phase yet - - just think of her as an overly large (yes, over 26 pounds!!) six or seven-month old - - but we will get there! Slowly, but SURELY, we WILL get there. I like to think of it with the the faith and mind of my precious two-year old... Day says, "When Danika gets better, then she comes home! I can teach her things!" or... "When Danika's better, then she can see me!!" (I love the 'WHEN' part of those sentences!) Danika's sight has not yet returned, but sometimes you wouldn't know it when you watch the speed and accuracy with which she'll grab or swat a toy, my hand, my face, etc. She's like my little ninja girl! For those of you wondering, it's so true about other faculties kicking in to compensate for the one that is lost. You just can't help but fall in love with her - - she remains a sweet little lovebug through all of this - my miracle! There is always so much HOPE when you take in just how far she's come... always remember there is HOPE. Trust in that!!
So, what's next for our little one - from a medical perspective anyway?? Well, a 'workup' (CT scans, MIBG scan, and bone marrows) is scheduled for the end of this month. Based on those results, the Neuroblastoma Team may recommend four more rounds of low-dose chemo (two rounds of cyclophosphamide/topetecan and two rounds of irinotecan/temozolomide), or they may decide to go in a different and more aggressive direction, the details of which are still unknown or undisclosed, perhaps. I prefer the former over the latter, obviously (although it means a minimum of 12 more weeks up here, in treatment, and away from our family in South Florida), and so we will be praying for good/steady/expected scan results. They want to see no progression, of course, and we want to see clear scans and experience restored vision!! Please - Let's come together to ask God for the miracle of clear scans, clean marrow, and for Danika to open her eyes and SEE the world around her!
Thanking you all in advance for following Danika's journey and for your continued prayers. You all are a HUGE encouragement to me - with love, faith, and so much HOPE -
Team Stanchi
Monday, January 11, 2010
Wednesday, December 9, 2009
Wednesday, 12.09.09 - Chemo Delayed...
I haven't had a chance to post separately here on this site, so for now I'm going to paste my carepage update in here so you are up to date if this is the only site you view...
So, the plan is for chemo to begin on Monday, the 14th, provided of course that Danika's counts are where they need to be. Today is day 21 of this cycle, but I guess the chemo and the infection from last round really wiped her out. It is a bit unnerving to see her platelets only at 40k so far into this cycle. Well, this will give her some extra time to recover and maybe get some of the 'yucky' out before we start all over again. Today was especially high on the 'yucky' scale as Danika has already been sick four times (can we just Praise God for suction machines right now?!?). It's a lot of mucous so it has me wondering between the antibiotics and her cutting four teeth, if all that isn't the culprit. Of course there are other meds and, perhaps I didn't choose the best time to see how she'd do if I stopped the zofran (anti-nausea medicine). Sigh... All this while increasing her slowly on her feeds as well. So hard to tell what can be causing it - or probably a combination of everything her little body is dealing with. We're holding at 32, but I have a feeling I may be decreasing a bit if the nausea doesn't stop. My prayer, as I've shared, is for 35 ml/hour on the feeds. This will give me enough time to get the necessary free water in her each day.
Thanks for reading, supporting, praying, and posting back to me!
Blessings,
Danielle
P.S. - Be sure to check out the Poker Run this Sunday, the 13th - five stops between Ralph's Standup Bar in Jupiter and J&S FishCamp in Okeechobee - sounds like a lot of fun - wish Danika and I could be there to watch it all!! Details on the www.danikagrace.org site.
So, the plan is for chemo to begin on Monday, the 14th, provided of course that Danika's counts are where they need to be. Today is day 21 of this cycle, but I guess the chemo and the infection from last round really wiped her out. It is a bit unnerving to see her platelets only at 40k so far into this cycle. Well, this will give her some extra time to recover and maybe get some of the 'yucky' out before we start all over again. Today was especially high on the 'yucky' scale as Danika has already been sick four times (can we just Praise God for suction machines right now?!?). It's a lot of mucous so it has me wondering between the antibiotics and her cutting four teeth, if all that isn't the culprit. Of course there are other meds and, perhaps I didn't choose the best time to see how she'd do if I stopped the zofran (anti-nausea medicine). Sigh... All this while increasing her slowly on her feeds as well. So hard to tell what can be causing it - or probably a combination of everything her little body is dealing with. We're holding at 32, but I have a feeling I may be decreasing a bit if the nausea doesn't stop. My prayer, as I've shared, is for 35 ml/hour on the feeds. This will give me enough time to get the necessary free water in her each day.
Thanks for reading, supporting, praying, and posting back to me!
Blessings,
Danielle
P.S. - Be sure to check out the Poker Run this Sunday, the 13th - five stops between Ralph's Standup Bar in Jupiter and J&S FishCamp in Okeechobee - sounds like a lot of fun - wish Danika and I could be there to watch it all!! Details on the www.danikagrace.org site.
Saturday, October 24, 2009
THANK YOU!!
Thank you to everyone who came out to support the rummage sale last weekend in Jupiter and also at the Chik-Fil-A Spirit Night for Danika on Northlake in PBG!! Don and I are - in a word - overwhelmed by the outpouring of love and support!!
As Danika's parents, we do sometimes wonder and want to ask "WHY" does this happen to our child?? To anyone's child?? However, when we see just how many lives have been touched already by our sweet little girl and the battle laid before her and our family, we get a glimpse of how God works to bring people together and to draw us closer to HIM in the process. She has already affected more lives than we know and probably would have ever been able to do, ourselves. If you find yourself naturally asking & wondering 'why', please remember how He is using all of this for His Good and His Glory be comforted in that. We are!
With weary but beyond grateful hearts and with HOPE -
Team Stanchi
As Danika's parents, we do sometimes wonder and want to ask "WHY" does this happen to our child?? To anyone's child?? However, when we see just how many lives have been touched already by our sweet little girl and the battle laid before her and our family, we get a glimpse of how God works to bring people together and to draw us closer to HIM in the process. She has already affected more lives than we know and probably would have ever been able to do, ourselves. If you find yourself naturally asking & wondering 'why', please remember how He is using all of this for His Good and His Glory be comforted in that. We are!
With weary but beyond grateful hearts and with HOPE -
Team Stanchi
Friday, October 23, 2009
And the surgeon says...
... the surgery is a 'go' for Monday, the 26th! Thank you all for your prayers for her counts - Danika's platelets were at 98K on Wednesday, the 21st, so they'll surely be over 100 by Monday in time for the surgery. They'll check again on Friday to be sure (update: Friday's counts showed her platelets at 101). (This - Day 17 - would actually be the earliest or tied with one other round on the intermediate risk protocol, I believe, where she would have been 'ready' for another round of chemo, had we been scheduled for it. So, the unrelenting diarrhea (still!), very painful cramping and some scary 'out-of-nowhere' vomiting is truly the worst of side effects for this round. Good to know should they decide to try one more round of this irinotecan post-surgery. Plus, with the G/J tube in place, perhaps the meds might help to curb some of the side effects.)So, here is the 'plan'... (deep breath - this is a bit lengthy...)
~ The surgeon will remove as much of the main tumor as is safe for Danika. The updated CT scan does show a decrease in size, so that was good to see on the screen. I did not ask for size specifics. The location of the tumor (above her left kidney) proves problematic in that the vena cava (forgive me as I didn't ask to specify whether superior or inferior and without the medical wherewithall, I can't figure that one out on my own - although since this post on carepage, I did have a friend write and say that since the organ is below the heart it must be the inferior vena cava) and aorta are affected as well as the vein leading into the kidney. (They all look sort of 'squished' in the area along with the kidney, itself, when viewing the image on screen.) There is, of course, the potential for excessive bleeding.
~ The surgeon is unable to do anything about the metastases in her liver as they are too many 'spots' and too widespread. Basically he would need to remove her entire liver and clearly, this is not an option. He will, however, biopsy some of the diseased portions of her liver to see the status of what is there.~ He will remove the left adrenal gland (leaving the right will, at least, for now, keep her from needing lifelong medication). It is possible that she will lose her left kidney as well. He is not sure about that, but it is a possibility.
~ He may possibly place a temporary central line if needed (monitor central venous pressure, transfusion, etc.). He didn't say where - in the past during her stay in the PICU, it was placed in her groin.
~ The surgeon will also remove as many lymph nodes in the area as he feels necessary. They are removed and the area is 'capped off' so to speak by a titanium clip. (My bionic baby!!)~ Danika will also have the long-awaited G/J tube inserted (he is pretty certain he can do this). This will enable us to slowly taper the TPN (IV nutrients) and begin formula feeds again. TPN is not a long-term solution so we look forward to the day it is no longer necessary. She can then also receive whatever oral medication might be needed at any given time which we've not been able to administer since she so deftly and defiantly removed her ND tube back in August.
~ I've also requested a double-lumen mediport be inserted so that we can replace the leukapheresis catheter we use right now for her 'access'. Danika is a 'puller' (or 'grabber', take your pick!) and the two lumens (or 'tubes') hang externally from her chest so, naturally, she wants to pull on them. And when she's really mad, she yanks HARD sometimes (changing her clothes is quite the challenge!) and 'claws' at the dressing over her site. A mediport is under her skin... she can take a bath like a regular baby and splash in the water whereas with the leuk line, we can only sponge bathe her being careful to not wet the site and she HATES it. (Since this post on carepage, a lovely NB mom staying across the hall from us - mom to Logan - gave us some bath toys and bubble bath for Dani's birthday in anticipation of the day we can have some fun in the tub again!) The risk of infection, although still present, is less with a mediport. Once healed, dressing changes are not an issue - something else she hates! (Dressing changes are a weekly occurrence and necessary to keep the site sterile and keep infection away.) And, when the port is not 'accessed' (can be accessed with the same needle for up to a week) for chemo treatments, meds, fluids, etc., there is nothing external, so nothing to pull on! Fantastic!! Initially the leuk line she has will stay in, but her surgeon tells me the procedure to remove it is pretty unremarkable and can be done in Sloan's procedure room , vs. the OR, once she is recovered from the surgery.
During and after the surgery, Danika will be on a vent to secure her airway, and hopefully she will remain sedated for several days while recovering in the PICU. I actually laughed out loud when the surgeon said that. We'll see about that! I think to myself. Some of you may recall how NOT sedated she was for the better part of her 3 1/2 weeks in the PICU over the summer. However, I have lots of HOPE for a different experience for her - - after all, this is a very different and stronger Danika than the agitated and delirious baby of four months ago who was in tremendous pain from severe mucositis and also dealing with opsoclonus and simultaneously losing her sight - one who is well-adjusted (seemingly) to her loss of sight, treatments in general, and of course, loud noises (prevalent in the PICU at all hours of the day and night). I'm advised the recovery time could be 7 - 10 days, or even longer than that, depending, of course, on Danika. Not all of this recovery needs to be in the PICU, so once she's strong enough (and off the vent!), she can hopefully be moved back to Sloan. I've been pre-warned that she will most likely be 'puffy' from excess fluids. She'll have a tube in her chest as well as her bladder to assist with fluid control/drainage.
There is also the question of whether to have the anesthesiologist use an epidural to administer post-op pain medication. First, I'm told her platelet count should be above 150 for this - a number we rarely see without transfusion since her marrow is so crowded by the neuroblastoma, itself, and also from the damage from six rounds of chemo. There is the risk of bleeding and paralysis as with any procedure of that kind, however the pain management for her is the issue here and I understand she will be in a great deal of pain as this is a major abdominal surgery (remember your c-section, ladies? amplify it many, many times over!!). Certainly this would be more effective than the PCA (infusion pump regularly delivering meds, plus also activated by a button to administer pre-determined amount of 'rescue' pain meds) she'll be hooked to, but also more risky. Don and I will be in prayer and discussion about that this weekend just in case her counts are where they need to be and she is eligible.
Whew! Did you get all that? =) So, what do we do now? Well... we celebrate her 1st birthday for one! And what a miracle birthday it is! Then, we simply wait and pray for her to be as strong and ready for this surgery as possible. I am thankful we have a few more days to get her there. When the appt was over and I asked the surgical NP if there was anything else I should know or do, she simply replied that I should enjoy the weekend with Danika as much as possible. So, I plan on doing just that. Plain and simple. I'm going to enjoy being with my little girl. I pray all of you reading this also take time to truly drink in and enjoy whatever time you are blessed to spend with those you love - especially your children. Truly - What a gift each and every day and moment is! Savor them like crazy!!
With HOPE from Team Stanchi
~ The surgeon will remove as much of the main tumor as is safe for Danika. The updated CT scan does show a decrease in size, so that was good to see on the screen. I did not ask for size specifics. The location of the tumor (above her left kidney) proves problematic in that the vena cava (forgive me as I didn't ask to specify whether superior or inferior and without the medical wherewithall, I can't figure that one out on my own - although since this post on carepage, I did have a friend write and say that since the organ is below the heart it must be the inferior vena cava) and aorta are affected as well as the vein leading into the kidney. (They all look sort of 'squished' in the area along with the kidney, itself, when viewing the image on screen.) There is, of course, the potential for excessive bleeding.
~ The surgeon is unable to do anything about the metastases in her liver as they are too many 'spots' and too widespread. Basically he would need to remove her entire liver and clearly, this is not an option. He will, however, biopsy some of the diseased portions of her liver to see the status of what is there.~ He will remove the left adrenal gland (leaving the right will, at least, for now, keep her from needing lifelong medication). It is possible that she will lose her left kidney as well. He is not sure about that, but it is a possibility.
~ He may possibly place a temporary central line if needed (monitor central venous pressure, transfusion, etc.). He didn't say where - in the past during her stay in the PICU, it was placed in her groin.
~ The surgeon will also remove as many lymph nodes in the area as he feels necessary. They are removed and the area is 'capped off' so to speak by a titanium clip. (My bionic baby!!)~ Danika will also have the long-awaited G/J tube inserted (he is pretty certain he can do this). This will enable us to slowly taper the TPN (IV nutrients) and begin formula feeds again. TPN is not a long-term solution so we look forward to the day it is no longer necessary. She can then also receive whatever oral medication might be needed at any given time which we've not been able to administer since she so deftly and defiantly removed her ND tube back in August.
~ I've also requested a double-lumen mediport be inserted so that we can replace the leukapheresis catheter we use right now for her 'access'. Danika is a 'puller' (or 'grabber', take your pick!) and the two lumens (or 'tubes') hang externally from her chest so, naturally, she wants to pull on them. And when she's really mad, she yanks HARD sometimes (changing her clothes is quite the challenge!) and 'claws' at the dressing over her site. A mediport is under her skin... she can take a bath like a regular baby and splash in the water whereas with the leuk line, we can only sponge bathe her being careful to not wet the site and she HATES it. (Since this post on carepage, a lovely NB mom staying across the hall from us - mom to Logan - gave us some bath toys and bubble bath for Dani's birthday in anticipation of the day we can have some fun in the tub again!) The risk of infection, although still present, is less with a mediport. Once healed, dressing changes are not an issue - something else she hates! (Dressing changes are a weekly occurrence and necessary to keep the site sterile and keep infection away.) And, when the port is not 'accessed' (can be accessed with the same needle for up to a week) for chemo treatments, meds, fluids, etc., there is nothing external, so nothing to pull on! Fantastic!! Initially the leuk line she has will stay in, but her surgeon tells me the procedure to remove it is pretty unremarkable and can be done in Sloan's procedure room , vs. the OR, once she is recovered from the surgery.
During and after the surgery, Danika will be on a vent to secure her airway, and hopefully she will remain sedated for several days while recovering in the PICU. I actually laughed out loud when the surgeon said that. We'll see about that! I think to myself. Some of you may recall how NOT sedated she was for the better part of her 3 1/2 weeks in the PICU over the summer. However, I have lots of HOPE for a different experience for her - - after all, this is a very different and stronger Danika than the agitated and delirious baby of four months ago who was in tremendous pain from severe mucositis and also dealing with opsoclonus and simultaneously losing her sight - one who is well-adjusted (seemingly) to her loss of sight, treatments in general, and of course, loud noises (prevalent in the PICU at all hours of the day and night). I'm advised the recovery time could be 7 - 10 days, or even longer than that, depending, of course, on Danika. Not all of this recovery needs to be in the PICU, so once she's strong enough (and off the vent!), she can hopefully be moved back to Sloan. I've been pre-warned that she will most likely be 'puffy' from excess fluids. She'll have a tube in her chest as well as her bladder to assist with fluid control/drainage.
There is also the question of whether to have the anesthesiologist use an epidural to administer post-op pain medication. First, I'm told her platelet count should be above 150 for this - a number we rarely see without transfusion since her marrow is so crowded by the neuroblastoma, itself, and also from the damage from six rounds of chemo. There is the risk of bleeding and paralysis as with any procedure of that kind, however the pain management for her is the issue here and I understand she will be in a great deal of pain as this is a major abdominal surgery (remember your c-section, ladies? amplify it many, many times over!!). Certainly this would be more effective than the PCA (infusion pump regularly delivering meds, plus also activated by a button to administer pre-determined amount of 'rescue' pain meds) she'll be hooked to, but also more risky. Don and I will be in prayer and discussion about that this weekend just in case her counts are where they need to be and she is eligible.
Whew! Did you get all that? =) So, what do we do now? Well... we celebrate her 1st birthday for one! And what a miracle birthday it is! Then, we simply wait and pray for her to be as strong and ready for this surgery as possible. I am thankful we have a few more days to get her there. When the appt was over and I asked the surgical NP if there was anything else I should know or do, she simply replied that I should enjoy the weekend with Danika as much as possible. So, I plan on doing just that. Plain and simple. I'm going to enjoy being with my little girl. I pray all of you reading this also take time to truly drink in and enjoy whatever time you are blessed to spend with those you love - especially your children. Truly - What a gift each and every day and moment is! Savor them like crazy!!
With HOPE from Team Stanchi
Sunday, October 4, 2009
Oct 3rd - Scan Results...
Well, it's been quite the week and it is with a heavy heart that I report the results from Danika's scans. After five rounds of chemo, including the first high dose round, Danika's disease is unaffected. There is no change in the neuroblastoma on either CT scans or the MIBG scan. I must admit, my stomach starts to churn and I get a bit of shaky-on-the-inside feeling just typing the words. Can it be true? Shock sets in as it has a few times since her initial diagnosis in that cold dark ER room. There are some crazy twists and turns on this 'ride' and we're only four months in.
This Monday morning, 10/5, will bring a decision from the team as to whether to continue on the same intermediate risk chemo protocol (COG 3961) with round 5, or to begin a new protocol - one which they expect will not drop her counts as severely (a drug called 'Irinotecan'). This will help in keeping on target for her tumor resection. As I tried to press for an answer regarding whether they have experienced a lot of success with the different chemo agents in kids like Danika, looking for some kind of HOPE, the doctor pointed out to me that cases like Danika's are pretty rare so he wasn't able to really answer that question. There are some options at this point, which gives me hope in the midst. There is also the thought of perhaps taking her off chemo treatment altogether and moving on to something like MIBG therapy or antibody therapy, just to name two. That is not for the here and now however. He was just thinking/talking out loud. Surgery is still scheduled for late October at this point. They are constantly discussing Danika's case trying to figure out what will work best for her. They feel she is one of those kids who will always show disease, but that it doesn't progress. They do know of several who survive and always show disease on their scans - that is, they never reach NED ("No Evidence of Disease"). At least at this point, the neuroblastoma hasn't increased. That is something to be thankful for. That is a BIG something.
A bit of positive news - the four stem cell harvests yielded much more than the goal of 7 million per kilo - actually a bit over 16 million! The stimulation of her bone marrow to produce the cells caused her some pretty intense bone pain for several days, but we are past that now and hopefully will not need to do that again - at least not any time soon. If ever Danika needs those stem cells down the line, they are there waiting for her.
A dear friend wrote me recently and really put into words a lot of what I've been feeling even before hearing about the test results and now it is even more right on... I will use some of her words and insert my own where appropriate...
Have been really thinking a lot about how God uses these seasons of, shall we say, challenges in our lives. ...lately I have found so much hope in the Lord that it makes me feel joyous, even in the midst of it. It may not seem it at times in the physical "here and now", (surely my family can attest - I've not been the easiest person to be around some days!) but it is so true to where I am at. I surely have moments of great weakness... sadness... even fear... at times, it is unimagineable. It is actually still surreal to me. Are we really here? I walk through the clinic and think... this is our life now... really?? Yes, really. I have always treasured Romans 8:28- “and we know that in all things God works for the good of those who love Him and who have been called, according to His purposes”, but lately it has come alive for me in a new way. The idea of “counting it all joy” when we are suffering (or watching our children suffer) does not come naturally (understatement!), but I am seeing that God is using all of it, not just some of it, for a greater purpose down the road. Danika, I believe, was born for a greater purpose than we can see right now. What we all want when God gives us a child, is a perfectly healthy, “normal “one. I certainly never envisioned for Danika the experiences she would have the day she was born. We take for granted that our children will lead happy healthy long lives because we love them so much and somehow think that will be enough. I picture my two girls growing up together... ballet class maybe... Day helping Danika learn to walk and talk... their high school graduation... their weddings (picturing each as the other's maid of honor)... We forget just how little we have control over in life, don't we? What I know now, is that a heart that is yielded to the Lord, can endure anything, because the revelation of God’s miraculous hand on our lives has enough power to sustain us through whatever He purposes for us. Every day brings new revelation, if you look for it. I am hanging on to God’s promises for my family – “For I know the plans I have for you, plans for a hope and a future, plans to prosper you.” I know so many of you are hanging on to those promises for us as well and continuing to lift us in prayer - as always, THANK YOU... it may not seem it when you look at scans and reports, but I have to stop and look UP and remember that my hope is in the Lord... and trust in His ultimate love and plan for Danika. He has brought us this far... using family, friends, friends of family, and lots of you we've never met who are praying constantly for us. It is a dark and dangerously slippery slope to do otherwise and I refuse to go there (or if I slip, at least I refuse to stay there!) She is a daughter, little sister, granddaughter, niece, cousin... and dearly and intensely loved by so many near and far. She is my angel here on earth - a gift from God we prayed for... and she is a warrior!! Not by choice, of course, but a warrior she is, nonetheless.
One day, we will know God’s purposes in all of this (this side of Heaven? Maybe... maybe not), but for the time being, we seek and find HOPE, peace and joy and thanksgiving, moment by moment. Moments like having Danika giggle again... break into a HUGE smile when she realizes that she knows who is next to her and grabs your hand and arm and doesn't want to let go b/c she's so thrilled to know it's you... like tonight when she grabbed my sister's hand and pulled it close to her cheek and knew Aunt Dinine was next to her - precious!... like the huge smile when she knows Uncle Jonathan is going to hold her... like when my mom sings "Goodnight Sweetheart" and she stops crying (she loves the 'oldies')... having her fall asleep in my arms because that's all she wanted was to be held by her mommy in that moment... these are the moments I am so thankful for in the midst of this storm. These are the moments I hold on to... they are heartbreaking and uplifting all at the same time... the moments that sustain me.
And so, I ask for your continued prayers as we move toward Monday and decisions are made for her treatment... prayers for her increased strength and of course complete HEALING. Keep HOPE alive!!
Blessings from Team Stanchi
This Monday morning, 10/5, will bring a decision from the team as to whether to continue on the same intermediate risk chemo protocol (COG 3961) with round 5, or to begin a new protocol - one which they expect will not drop her counts as severely (a drug called 'Irinotecan'). This will help in keeping on target for her tumor resection. As I tried to press for an answer regarding whether they have experienced a lot of success with the different chemo agents in kids like Danika, looking for some kind of HOPE, the doctor pointed out to me that cases like Danika's are pretty rare so he wasn't able to really answer that question. There are some options at this point, which gives me hope in the midst. There is also the thought of perhaps taking her off chemo treatment altogether and moving on to something like MIBG therapy or antibody therapy, just to name two. That is not for the here and now however. He was just thinking/talking out loud. Surgery is still scheduled for late October at this point. They are constantly discussing Danika's case trying to figure out what will work best for her. They feel she is one of those kids who will always show disease, but that it doesn't progress. They do know of several who survive and always show disease on their scans - that is, they never reach NED ("No Evidence of Disease"). At least at this point, the neuroblastoma hasn't increased. That is something to be thankful for. That is a BIG something.
A bit of positive news - the four stem cell harvests yielded much more than the goal of 7 million per kilo - actually a bit over 16 million! The stimulation of her bone marrow to produce the cells caused her some pretty intense bone pain for several days, but we are past that now and hopefully will not need to do that again - at least not any time soon. If ever Danika needs those stem cells down the line, they are there waiting for her.
A dear friend wrote me recently and really put into words a lot of what I've been feeling even before hearing about the test results and now it is even more right on... I will use some of her words and insert my own where appropriate...
Have been really thinking a lot about how God uses these seasons of, shall we say, challenges in our lives. ...lately I have found so much hope in the Lord that it makes me feel joyous, even in the midst of it. It may not seem it at times in the physical "here and now", (surely my family can attest - I've not been the easiest person to be around some days!) but it is so true to where I am at. I surely have moments of great weakness... sadness... even fear... at times, it is unimagineable. It is actually still surreal to me. Are we really here? I walk through the clinic and think... this is our life now... really?? Yes, really. I have always treasured Romans 8:28- “and we know that in all things God works for the good of those who love Him and who have been called, according to His purposes”, but lately it has come alive for me in a new way. The idea of “counting it all joy” when we are suffering (or watching our children suffer) does not come naturally (understatement!), but I am seeing that God is using all of it, not just some of it, for a greater purpose down the road. Danika, I believe, was born for a greater purpose than we can see right now. What we all want when God gives us a child, is a perfectly healthy, “normal “one. I certainly never envisioned for Danika the experiences she would have the day she was born. We take for granted that our children will lead happy healthy long lives because we love them so much and somehow think that will be enough. I picture my two girls growing up together... ballet class maybe... Day helping Danika learn to walk and talk... their high school graduation... their weddings (picturing each as the other's maid of honor)... We forget just how little we have control over in life, don't we? What I know now, is that a heart that is yielded to the Lord, can endure anything, because the revelation of God’s miraculous hand on our lives has enough power to sustain us through whatever He purposes for us. Every day brings new revelation, if you look for it. I am hanging on to God’s promises for my family – “For I know the plans I have for you, plans for a hope and a future, plans to prosper you.” I know so many of you are hanging on to those promises for us as well and continuing to lift us in prayer - as always, THANK YOU... it may not seem it when you look at scans and reports, but I have to stop and look UP and remember that my hope is in the Lord... and trust in His ultimate love and plan for Danika. He has brought us this far... using family, friends, friends of family, and lots of you we've never met who are praying constantly for us. It is a dark and dangerously slippery slope to do otherwise and I refuse to go there (or if I slip, at least I refuse to stay there!) She is a daughter, little sister, granddaughter, niece, cousin... and dearly and intensely loved by so many near and far. She is my angel here on earth - a gift from God we prayed for... and she is a warrior!! Not by choice, of course, but a warrior she is, nonetheless.
One day, we will know God’s purposes in all of this (this side of Heaven? Maybe... maybe not), but for the time being, we seek and find HOPE, peace and joy and thanksgiving, moment by moment. Moments like having Danika giggle again... break into a HUGE smile when she realizes that she knows who is next to her and grabs your hand and arm and doesn't want to let go b/c she's so thrilled to know it's you... like tonight when she grabbed my sister's hand and pulled it close to her cheek and knew Aunt Dinine was next to her - precious!... like the huge smile when she knows Uncle Jonathan is going to hold her... like when my mom sings "Goodnight Sweetheart" and she stops crying (she loves the 'oldies')... having her fall asleep in my arms because that's all she wanted was to be held by her mommy in that moment... these are the moments I am so thankful for in the midst of this storm. These are the moments I hold on to... they are heartbreaking and uplifting all at the same time... the moments that sustain me.
And so, I ask for your continued prayers as we move toward Monday and decisions are made for her treatment... prayers for her increased strength and of course complete HEALING. Keep HOPE alive!!
Blessings from Team Stanchi
Friday, September 25, 2009
First Blog Ever
Welcome to the very first blog for Danika Grace and her battle with Neuroblastoma. (This is my first blog, ever, so I'm learning all about this as I go).
Over the coming months I hope to educate you on Neuroblastoma, my family's struggle with cancer, and how people in our lives are proving that God loves us so much!
Thank you for reading, and stay tuned. - Dani
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